Quality statement 2: Referral to a specialist

Quality statement

People with a positive serological test for coeliac disease are referred to a specialist and advised to continue with a gluten‑containing diet until diagnosis is confirmed.

Rationale

As a positive serological result for coeliac disease is not sufficient to confirm diagnosis, people should be referred to a specialist for assessment and further investigation. Confirming diagnosis will ensure that people with coeliac disease can get support to help them manage their condition.

Quality measures

Structure

a) Evidence of local arrangements to ensure that people with a positive serological test for coeliac disease are referred to a specialist.

Data source: Local data collection.

b) Evidence of local arrangements to ensure that people referred to a specialist following a positive serological test for coeliac disease are advised to continue with a gluten‑containing diet until diagnosis is confirmed.

Data source: Local data collection.

Process

a) Proportion of people with a positive serological test for coeliac disease who are referred to a specialist.

Numerator – the number in the denominator who are referred to a specialist.

Denominator – the number of people with a positive serological test for coeliac disease.

Data source: Local data collection.

b) Proportion of people referred to a specialist following a positive serological test for coeliac disease who are advised to continue with a gluten‑containing diet until diagnosis is confirmed.

Numerator – the number in the denominator who are advised to continue with a gluten‑containing diet until diagnosis is confirmed.

Denominator – the number of people referred to a specialist following a positive serological test for coeliac disease.

Data source: Local data collection.

Outcome

Diagnosed prevalence of coeliac disease.

Data source: Local data collection.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (for example general practices, community healthcare providers and secondary care) ensure that processes are in place for people with a positive serological test for coeliac disease to be referred to a specialist and advised to continue with a gluten‑containing diet until diagnosis is confirmed.

Healthcare professionals (such as GPs and consultants) refer people with a positive serological test for coeliac disease to a specialist and advise them to continue with a gluten‑containing diet until diagnosis is confirmed.

Commissioners (such as clinical commissioning groups and NHS England) commission services that refer people with a positive serological test for coeliac disease to a specialist and advise them to continue with a gluten‑containing diet until diagnosis is confirmed. Commissioners also ensure that an effective specialist service for people with coeliac disease has capacity to meet expected demand.

What the quality statement means for patients and carers

People who have had a blood test that shows they might have coeliac disease should be referred to a specialist to have more tests to confirm whether or not they have coeliac disease. They should carry on eating foods containing gluten until they find out whether or not they have coeliac disease.

Source guidance

Definitions of terms used in this quality statement

Positive serological test for coeliac disease

When healthcare professionals request serological tests to investigate suspected coeliac disease, laboratories should test for total immunoglobulin A (IgA) and IgA tissue transglutaminase (tTG) as the first choice. A positive serological test result is defined as unambiguously positive IgA tTG alone, or weakly positive IgA tTG and positive IgA endomysial antibodies (EMA). In people who have IgA deficiency, a serologically positive result can be derived from any one of the IgG antibodies.
[Coeliac disease (NICE guideline NG20) recommendations 1.2.2, 1.2.3 and 1.3.1]

Referral to a specialist

People aged 16 and over should be referred to a gastrointestinal specialist for endoscopic intestinal biopsy. Children and young people under 16 should be referred to a paediatric gastroenterologist or paediatrician with a specialist interest in gastroenterology for further investigation that may include, but is not limited to, one or more of the following:

  • an endoscopic biopsy

  • an IgA EMA test to confirm serological positivity

  • human leukocyte antigen (HLA) genetic testing.

[Coeliac disease (NICE guideline NG20) recommendations 1.3.1 and 1.3.2]

Gluten-containing diet

People who are following a normal diet (containing gluten) should be advised to eat gluten in more than 1 meal every day for at least 6 weeks before testing for coeliac disease.
[Coeliac disease (NICE guideline NG20) recommendation 1.1.4]